When Doctor Appointments Remind Me of My Diagnosis

The hallway felt cold despite the extra blanket the transfer specialist gave me before moving me in my hospital bed. We headed to another wing of the building for yet another test. I waited in a dimly lit hallway for 45 minutes or so, counting the minutes, hours, and days since I had seen my own bed.

Every time I visit the hospital for a pulmonary hypertension checkup, memories from six years ago come flooding back. They include flashbacks of waiting in that hallway for a ventilation/perfusion lung scan to check for blood clots that would indicate pulmonary embolisms.

Whether you’re a patient or a caregiver, friend, or family member, hospitals can be difficult places. Life and death often hang in the balance, and emotional weight can press down harder than gravity. Tough decisions produce traumatic experiences that stay with us long after we leave.

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I walked through those hospital doors again this month for my quarterly appointment. The timing just happened to coincide with the anniversary of my PH diagnosis six years ago. A visit to urgent care that March morning turned into an unexpected staycation in a hospital bed. It brought new knowledge of a life-threatening rare disease and a glimpse of my new reality.

As I waited for the nurse to call my name, I thought about all that had occurred during the many checkups over the years — the blood draws, the 6-minute walk tests, the echocardiograms, the CT scans, the spirometry tests, the consultations with those on my pulmonary care team. Sitting there, I thought about the entirety of my PH diagnosis as if it were wrapped up into a single appointment.

I’ve had more than two dozen full-day appointments with my PH care team since my diagnosis, not including the hospitalizations, ER trips, and other therapy appointments. Like many patients with PH or other chronic illnesses, I’ve had good appointment days and bad ones. On the worst days, I’ve been left at the mercy of this terrible disease.

During each quarterly checkup, I try to identify a behavior or a choice related to my PH treatment plan that I can improve upon before my next appointment. This usually involves diet, weight management, supplemental oxygen use, exercise, or checking in with my sleep doctor.

I don’t know if other patients take this approach, but it helps me to retain a sense of control as I ride that PH roller coaster.

My current behavioral focus is oxygen therapy. I’ll use an oxygen concentrator when I need it, but I’m not always the quickest to throw on the nasal cannula.

At my last appointment, before taking a 6-minute walk test, I fueled up on oxygen until my saturation levels were close to 100, which felt great! Without supplemental oxygen, my saturation levels usually are in the low 90s.

But recently, I’ve experienced sharper episodes of shortness of breath over shorter distances. My doctor suggested I use supplemental oxygen more frequently, which would reduce oxygen decompensation and improve my overall health.

My intentions don’t always result in a desired outcome, though. I still struggle with embarrassment and shame when wearing oxygen in public, and my stubbornness sometimes gets the best of me. But that doesn’t mean I fold in defeat. I take things one day at a time and remind myself that I will have another appointment in a few months.

The last six years haven’t been easy — don’t even ask me about the bloody noses. But I’m grateful to be where I am.

My next appointment will bring me back to the hospital where my PH journey began. In many respects, I consider myself lucky to have received good treatment from some of the same doctors who were on my original care team when I was diagnosed.

At the same time, I know I’ll have another run-in with that nagging memory of me waiting in a darkened hallway, wondering how my life will change.

Follow Mike on Twitter: @mnaple.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.